2022 Jordan's Guardian Angels Recap

Happy New Year! We are so honored that each and every one of you are by our side as we continue our journey toward a treatment or a cure for Jordan’s Syndrome. What a year it has been. Our community has grown on a weekly basis as we added new families from around the world, our research team made incredible strides and breakthroughs and has some new and exciting updates to share, our JGA Team is expanding and evolving to meet your needs as this global community grows, and so many of you are stepping up to help move this effort forward.
There is so much to look forward to in 2023 with new ways for all of you to get involved on a larger scale at JGA. We hope that you are all as excited as we are. For now though, let’s take a look back at all that we have accomplished in 2022.


JGA’S brilliant team of researchers is unrelenting in their efforts to find a treatment or a cure for Jordan’s Syndrome. All of that hard work is truly paying off, and our team has had incredible breakthroughs in the last 6 months.
Our JGA research team met in Palm Springs on December 11th for a full day workshop of sharing, brainstorming, and planning research next steps. We are so excited to share that we are closer than ever to finding a treatment that can help our children.  
Mice clinical trials are showing tremendous promise. After screening many FDA approved drugs or drugs currently in clinical trials, our team has identified a winning lead! Mice with Jordan’s Syndrome showed improvement in spatial awareness, memory and cognition after being treated!! While we have a lot more work to do, we can’t help but be excited with the findings and its significance for our community. 
Our team will be ramping up mice clinical trials in 2023, collecting additional data, and possibly positioning us to start human clinical trials in 2024. We will keep you all updated as more data become available.


Click here to hear from our lead researcher Dr. Wendy Chung about the latest findings.
As always, we thank our researchers for all of their diligence, commitment, care and concern for our children. Without them, nothing would be possible.


Our global community grows every week. We now have approximately 341 people in 36 countries diagnosed with Jordan’s Syndrome and we know that thousands more are out there. We are proud that together we are spreading the word about Jordan’s Syndrome worldwide and helping to make medical providers aware of Jordan’s Syndrome and JGA.



The true highlight of the year for our JGA Team was our family conference held in July in New York City. It was a dream come true to have 65 of our families together under one roof to learn, laugh, hug, dance, and exchange ideas.
The event was not only a family reunion but also necessary to move our research forward. 70 blood samples were collected, 50 clinical data points were gathered and 30 EEG’s were taken. A huge success!!

Click here to watch our Family Conference 2022 Recap Video
We are looking forward to another JGA Family Conference in 2024. Details to come soon regarding dates and location!



Your JGA Team worked hard in 2022 to tell the world about Jordan’s Syndrome and Jordan’s Guardian Angels and expand our reach in the rare disease space. We are proud to announce we have now partnered with multiple important rare disease groups to help get the word out and work together to change the lives of children and adults with rare disease.
To date, our partnerships include The Rare Epilepsy Network (REN), The EveryLife Foundation, Rare Disease Legislative Advocates (RDLA), Global Genes, Rare Revolution Magazine, Patient Worthy, National Organization of Rare Diseases (NORD), Extra Lucky Moms, Rare., Federation of American Societies for Experimental Biology, and more.
Jordan's Guardian Angels is proud to announce we have joined The Epilepsy Foundation, The Rare Epilepsy Network, and a coalition of other organizations in support of Seizure Safe Schools legislation.
We are also expanding our role in the world of advocacy taking part in the Rare Disease Legislative Advocates Rare Disease Week on Capitol Hill. Members of the JGA team networked with other rare disease patients and advocates, discussed important legislation with lawmakers, and learned so much from others on the front lines bringing change to patients’ lives.
Advocacy is top of mind for our team but also for our families. Many of our families stepped up at our Family Conference and asked how they can help to advocate for legislation that benefits the rare disease community.
Now, we are thrilled to share that Jordan’s Guardian Angels was invited by the Everylife Foundation to join their Community Congress. It is our hope that we can elevate ourselves in the advocacy space.
Community congress is dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together in a strategic advisor council. The council provides advice and insight on urgent policy issues, programs and initiatives. We will keep you posted as to how you can help as we learn more.
Jordan’s Guardian Angels is also quickly becoming a model for other foundations beginning their rare disease journey. We have met with several groups including our 3CA contingent to help support them as they begin their journey, and we have met with others who recently received a rare disease diagnosis and are hoping to have the success that Jordan’s Guardian Angels is having in finding a treatment or a cure. We are paying it forward and hoping that in supporting these groups and many others, they will do the same.
There are 7,000 rare diseases known worldwide and 25-30 million people live with one. That’s 1 in 10 Americans living with rare disease right now. Joining forces with these far-reaching groups will truly help to move our cause forward and bring Jordan’s Syndrome and Jordan’s Guardian Angels to the forefront in the rare disease space.

Shine Like Ozzie

We hold space in our hearts every day for sweet Ozzie Deason and all of the children in our community who have passed away due to Jordan’s Syndrome. We want their lights to shine forever.
We are thrilled to share that the Shine Like Ozzie Scholarship will return once again this year. Our $1,000 Shine Like Ozzie Scholarship will once again open on Ozzie’s Birthday, December 31st. The scholarship is open to undergraduate and graduate students studying anything related to Epilepsy.
Please help us to spread the word. Submissions will be accepted through January 31,2023 and a winner will be announced on rare disease day February 28, 2023.



35 episodes strong, our podcast, ‘A Rare Reality’ is on the rise. It is now regarded as one of Patient Worthy’s top rare disease podcasts to listen to, and we are gaining followers on a regular basis. If you haven’t checked it out, please take a moment to do so. Our conversations are both JGA and Jordan’s Syndrome specific and rare disease broad, covering topics that truly hit home for so many. The podcasts are available on all major platforms, or if you prefer, the entire conversation with video is on our website. Click here to listen!
Our website also got a facelift this year, streamlining it to simplify your user experience. If you haven’t yet taken a moment to look at the resource center, please do so. There you will find all of the important documents you need on your journey with Jordan’s Syndrome. And while you’re there, take a moment to read our blog! There is an incredible amount of detailed information there including recaps of our major fundraisers, our family conference and much more. Click here for the resource center and here for the blog.


Family Involvement

We want to take a moment to thank all of our families and supporters who have taken the time and effort to fundraise for and/or get involved in special roles at JGA, or both! Your work for our children is truly driving this research and for that we are extremely grateful.
As our community grows, we asked our families to step up and help our global reach. The Ambassador Program was launched this summer and already has representatives in numerous regions around the world. The Ambassadors are key to enable access to our communities across the globe, to support new families in their on boarding as they find us and to push us as a foundation to truly grow our mission globally. We would love to expand the program further, so please reach out if you are interested in becoming an Ambassador.
Many of our families have been looking for ways to get more involved with our efforts. The Special Projects committee is a way to help move JGA’s mission forward to better support individuals with Jordan’s Syndrome. The committee has really pushed the needle by acting as advisors who help identify gaps and brainstorm solutions. We thank everyone that actively contributed to this initiative and we look forward to another year of growth ahead.
Our sibling population is also top of mind here at JGA. We are constantly looking at new and innovative ways to support our siblings. To that end, we have tapped Lexi Levine, a JGA Sibling, to head up our Halo Project, a support system for our siblings. Lexi has received specialty training from Sib Shops to better serve our community. Her classes received rave reviews at our Family Conference, and we look forward to having many more opportunities for our siblings to come together in 2023.
There are big and exciting changes coming on the fundraising and involvement end of things at JGA in 2023. Stay tuned for more on who will be joining our team and helping to move these efforts forward and get each of you involved. We can’t wait to see what this global group can do to help find a treatment or a cure for our kids.


Jordan’s Guardian Angels is quickly gaining recognition including top honors from Global Genes, a leading rare disease patient advocacy organization. The group announced its annual Rare Champions of Hope Awards September 13th in San Diego, California. The night’s top honor went to the Rare Founder Award recipients Cynthia and Joe Lang, our very own co-founders of Jordan’s Guardian Angels.
This award recognizes those who exhibit commitment to connecting, empowering and inspiring the rare disease community through lifetime contributions and achievements advocating for people living with rare disease. We are so proud their incredible work is being recognized on a global stage.

JGA also was featured as part of a segment on The Today Show recently and was awarded $5,000 for all of the incredible work being done to find a treatment or a cure for Jordan’s Syndrome. We can’t thank NBC Universal enough for sharing our story and look forward to sharing more in the future.


Look Ahead (High-Level Goals, Themes, Research)

2023 is shaping up to be a massive year for Jordan’s Guardian Angels. There are incredible strides being made on the research front, our JGA Team is expanding and we are evolving to meet your needs.
As with every year, our team came together to look ahead and decide on our high-level goals for the year ahead which for 2023 focus on Access, Advocate, Communicate, Educate, Fundraise, Research and Support.

Access: Creating opportunities for connection between the patient community, the medical advisory board and the foundation.

Advocate: Pushing forward the greater rare disease agenda through legislation, partnerships and empowering the patient community to work for the greater good.

Communicate: Engage and deliver information to our global community, our families, our stakeholders, the medical community, and the world.

Educate: Informing the medical, the patient communities, and the public about all things Jordan’s Syndrome. (Symptoms, ways to diagnose, therapies, care before the cure, and research efforts.)

Fundraise: Grow current opportunities while looking at new and innovative ways to engage our families and new donors to raise funds in support of JGA’s mission.
Research: Continue to drive efforts in partnership with our research team to find a treatment and or a cure for Jordan’s Syndrome.
Support: Bring comfort and assistance to our families and sibling groups by bringing them together and providing an emotional support system and financial assistance when necessary. 
Each of these goals has numerous subgoals to make sure that no stone is unturned for this community. We are truly here for you, supporting you every step of the way.
We have also implemented monthly themes as you can see below. Our hope is that by providing themes for each month we can bring you topical, important, informative, and helpful information to better support our ever-changing community. There are so many ways for you to get involved and we look forward to sharing those ways with you in January during our ‘Get Connected with JGA’ month.


Thank You

Jordan’s Guardian Angels is now a recognized global name. We are growing, evolving, and leaving a mark on the rare disease space and we will continue to do so. This team - your JGA Team and our Research Team -  are dedicated to changing the world. With your help the sky is the limit. We thank you for all that you have done in 2022, and we can’t wait for 2023.
With gratitude, Your JGA Team


January 13, 2023


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New Jordan's Syndrome Publication Released

A new publication produced by some of the most respected geneticists in the world including Dr. Ghayda Mirzaa, Dr. Wendy Chung and Dr. Veerle Janssens from our very own research team provides new insight into Jordan’s Syndrome.

The study documents 76 cases of Jordan’s Syndrome and provides new details into the genetic mutation. 

The publication details a significantly expanded series of individuals with PPP2R5D variants enabling the experts to better characterize the association of this gene with neurodevelopmental disorders, neurobehavioral issues and other notable clinical features, as well as further our understanding of the molecular function and biochemical properties of causal PPP2R5D variants.

The clinical, molecular and functional data from this study could have important consequences for clinical evaluations and aid in the future treatment for affected individuals.

Read the full publication here.

Listen to or watch our new podcast as Dr. Mirzaa and Carole Bakhos take a deep dive into the new publication. 


November 14, 2022



Columbia University Selected as Rare Disease Center of Excellence

Big congratulations are in order for Jordan’s Guardian Angels Principal Investigator Dr. Wendy Chung, and Columbia University Irving Medical Center with New York Presbyterian. The group has been named a Center of Excellence by the National Organization for Rare Disorders (NORD).

Dr. Chung not only leads our research team but also leads the new Center of Excellence, and as a physician-scientist and clinical geneticist she has identified more than 50 rare genetic conditions.


“This is an important time in medicine, when we have the ability to identify more patients with rare diseases, identify what causes the disease, and use precision medicine to find ways to treat them,” Dr. Chung said.

Congratulations to you Dr. Chung and to your organization. We couldn’t be more proud of the work you and our research team do every day working for a treatment or a cure for Jordan’s Syndrome.

To read more about this latest accolade for Dr. Chung, click here.


November 23, 2021


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Journey to a Cure: 2020 Midterm Research Update

Journey to a Cure is a comprehensive update on our global research efforts, during the first 18 months of an international research project led by Jordan’s Guardian Angels into the PPP2R5D gene mutation also known as Jordan’s Syndrome.

Research was expanded to include studying two neighboring genes, PPP2R1A and PPP2R5C. It is believed that this family of genes are closely related and studying them as a group is essential to unlocking the mystery of the disease.

The progress in this short time period has been unprecedented as the team moves with a great sense of urgency working to improve the lives of the children and families affected and follow linkages to other diseases. Working collaboratively, the research team has accomplished in this short time, what would normally take 4-6 years.

Click here, or on the image below, to read the full report on our progress!



August 26, 2020


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VIDEO: JGA Researchers Nearing Breakthrough

In beautiful Lake Tahoe, California, the Jordan's Guardian Angels team came together to hear about the latest breakthroughs in our mission to cure Jordan's Syndrome, a mutation on the gene PPP2R5D.

Watch the video below to learn about the incredible advancements our research team is making, a journey we couldn't make without the incredible generosity of our international community.

To connect with our global community, visit


November 22, 2019



Families, Researchers from Around the Globe Discuss Groundbreaking Research

From Australia to the UK, Columbia to New Zealand and everywhere in between, families from all over the globe united outside San Francisco to fight for a cure to Jordan’s Syndrome, a rare genetic mutation linked to Autism, Alzheimer’s and even cancer.

44 families came together at the second annual Jordan’s Guardian Angels Family Conference in Burlingame, joining the Jordan’s Guardian Angels research team to learn about the latest breakthrough discoveries in our quest for a cure.

Jordan’s Syndrome, a mutation on the gene PPP2R5D, causes developmental delays, global hypotonia, and in some cases, seizures and autism symptoms.

"Jordan's Guardian Angels brought us all together... these strangers from around the world. We laughed, cried, danced, shared experiences, and built lifelong relationships,” said Carole Bakhos, project manager, whose daughter Yara has been diagnosed with Jordan’s Syndrome.

Researchers from nine universities across the U.S. and the world are joining in an unprecedented partnership to work collaboratively toward finding treatments to reverse or cure Jordan’s Syndrome. They provided promising updates on their progress, met individually with families, and collected blood samples given bravely by our children to be used for further study.

“Our research is always designed to move from bench to the bedside, from the laboratory to the patient. Having so many Jordan’s Syndrome families come together in one place makes the work we do so much more real and significant. We see the very people we’re trying to help, and it truly makes a difference,” said Jan Nolta, director of the UC Davis Stem Cell Program and the university’s Institute for Regenerative Cures in Sacramento. UC Davis is one of the institutions partnering on the research.

More than 80 people across the world have been diagnosed with Jordan’s Syndrome, though it’s believed there could be hundreds of thousands of undiagnosed cases.

The Jordan’s Guardian Angels global community was well-represented in Burlingame, with attendees from: Argentina, Australia, Austria, Canada, Colombia, Denmark, India, Ireland, Israel, New Zealand, Norway, Sweden, the Netherlands, the United Kingdom and multiple states across the United States.

“We now know, without a doubt, that we will never feel alone on this journey again,” Bakhos said. “We will continue to march hand in hand, motivated by our children. Our hard work and determination will make a difference in this world; it just has to!"

A huge thank you to all of our families, many of whom traveled thousands of miles to be in Burlingame. Without you, this journey would not be possible. Thank you to our international dream team of researchers, whose brilliance and dedication is driving this research forward to find answers that may help unlock answers for not only our children, but potentially millions more. Finally, we would be remiss without thanking Tree House Tribes, whose volunteers led multiple children's workshops throughout the conference.


April 4, 2019



One Year Later: Progress After the 1st Family Conference

One Year Later

One year has passed since families from around the world came together for the first-ever Jordan's Guardian Angels family conference in Washington, D.C. In a matter of months, incredible progress has been made in our quest to cure Jordan's Syndrome, a recently-identified mutation on the gene PPP2R5D linked to autism, Alzheimer's, intellectual disabilities and cancer.

Here's a look back at the major milestones we've reached since that first family conference held in August 2017.

Closer to a Cure

Our Growing Community

The Jordan's Guardian Angels global family has nearly doubled in size, from 35 to now more than 60 families impacted by Jordan's Syndrome.

Researchers Come Together

Jordan's Syndrome is reversible. That was the major conclusion of our international research team in late 2017.

Our team of researchers, scientists and medical investigators held multiple in-person meetings, discussing early discoveries made during initial research. Our team came together in December 2017 in New York City, and again in July 2018 in Denver.

Worldwide Support

Thanks to the inspiring generosity of communities around the world, we have raised hundreds of thousands of dollars at multiple fundraising events in Houston, Texas; Lake Tahoe, California; Phoenix, Arizona; and Belfast, Northern Ireland, to name a few.

State of California Funding (July 2018)

A Funding Foundation

In a milestone moment, the State of California supported our research with a $12 million allocation in the state budget.

Our Work Isn't Done

The funding will help provide for the first phase of the project, though we must still secure additional resources to take additional steps toward curing Jordan's Syndrome.

First iPSCs Created (April 2018)

The first batch of iPSCs (induced pluripotent stem cells) have been created by the New York Stem Cell Foundation (NYSCF), and distributed to Rutgers University for duplication and distribution.

The iPSCs were created from blood samples given by our children at the first family conference in Washington, D.C., and will play a critical role in understanding Jordan’s Syndrome – and how it may be reversed, treated or cured.

Click here to learn more!

First PPP2R5D Mouse (Jan. 2018)

Our first mouse with a verified PPP2R5D mutation was created in early 2018. Researchers will study mice modeled with the PPP2R5D mutation to better understand how Jordan's Syndrome causes developmental delays, and begin to explore potential ways to treat, reverse or even cure the mutation.

International Attention

Media outlets from around the world have helped spread awareness about Jordan's Syndrome research – and its potential to help unlock some of the world's greatest medical mysteries. Television stations and newspapers in Sacramento, Houston, Denver, Israel, the United Kingdom and beyond have shared the stories of our families, and the amazing possibilities our research holds.

See media coverage here!

Connect With Us

Contact Info

1121 L St, Suite 100, Sacramento, CA 95814

Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.